This time I have a question. Several days ago, I had the pleasure of meeting another survivor. He had an unknown primary and received radiation, as well as a left RND. He is now four years post treatment. That is the good news!

The bad news is he is now losing vision, hearing and has had surgery on his right side carotid artery to correct a problem. He told me that radiation was the cause of all his these more recent troubles.

We all talk about the "gift that keeps on giving" but I had no idea how much "giving" I'd be in receipt of. I would like more information as to the Life-long effects of radiation assuming the cancer is defeated. A list of potential long term radiation caused maladies and their respective symptoms and the time frame within which to expect symptoms.

I would have asked him what sort of radiation he had and where -- did he have IMRT which is better targeted and is able to avoid non-target organs and tissues better than the older external beam machines? If not, or if his cancer was in a different area this might account for the problems relative to others who are 4 years out.

Our ENT had radiation for her head cancer 18 years ago with old cobalt machine and other than persistant dry mouth and very reduced taste is doing fine. In fact, her quality of life continues to improve (in part due to new meds to increase salivary function). So radiation itself does not inevitably lead to additional problems.

Gail

Mark, i wonder if the fact that it was an unknown primary contributes to some of the issues. Radiation has to cover a wider area when the primary site is not known.

Anita

IMRT wasn't as commonplace 4+ years ago, so the odds were he didn't have it. You must also consider that the radiated areas are lead blocked differently depending on where the cancer primary was, and how diffuse they thought it to be, as well as what stage he was, which would have also added to the area radiated, and the volume of radiation. There are so many variables (these are just a few), let alone an individual's unique biology, that generalizations cannot be made. I can tell you from my own experience, now 6 years out from a maximum dose of conventional radiation, that there are issues besides xerostomia for me. Facial nerve exposure given the wide area of irradiation and total gy's has damaged that nerve bundle and I cannot completely control the right corner of my mouth. I have seen patients in hospitals that appear to have had a stroke leaving an entire side of their face drooping... not a stroke, but radiation induced nerve damage. I also have some issues with my right eye, again related to radiation exposure. Both of these issues began about 4 years out from treatment, and I am told may get progressively worse as time passes. There are plenty of peer-reviewed articles documenting the worst of all scenarios, and that is a radiation-induced malignancy. About 3% of high dose patients develop osteosarcomas in their mandibles around year 10. While all these are undesirable effects of the treatment, I just have to remember that without it I wouldn't be here at all today. I would have not had 6 years of wonderful and satisfying work, friendships, and experiences. OCF would not exist and the interaction with the thousands of patients, caregivers, doctors, and family members I have had would not have been part of my life. Are things perfect? No, but given the alternative I'm very pleased with my outcome even with the continued degeneration of nerve bundles and the negative possibilities that the future holds. It also holds wonderful positives as well, something I know Mark fully appreciates having spent time with him.

Mark,

I think about this from time to time when I have a new symptom that seems as though it could be radiation-related. Since my treatment was 16 years ago, it obviously wasn't IMRT, and I had brachytherapy on top of the external beam stuff.

Apart from the continuing dry mouth issues (which aren't as bad as they used to be), the only things that have developed that my doctors think could be after-effects are: 1) some degeneration in the cervical spine that I guess is a form of arthritis, and 2) a very small basal cell skin cancer (removed within the past month) near my jaw line.

In other words -- thankfully, not much to complain about.

Cathy

Gail, I would have liked to speak with this person longer but some folks don't like to talk about it that much. I can be reasonably sure he had XRT radiation. There is a certain amount of radiation that scatters outside the intended target area. That is why all the techs get to hide behind the lead wall while you are on the machine. I have a personal theory that my memory difficulties are related to radiation. More than a few others here have experenced some memory problems.

Anita, Yes from what he gestured he may infact had a beam pattern that went higher than what is standard.

To be sure, I was not yet complaining about being alive, but instead wondering what symptoms to be looking for and which might be serious.

Mark, I am also 4 years out of treatment and starting from a few months ago, I discover that from time to time, I cannot open my mouth wide enough to get the food in and both sides of the jaw become swollen for a few seconds. This does not happen all the time but you never know when your mouth is too lazy to open. Occasionally, when I am talking, similar thing happens and I have to stop for a while and cover my mouth with my hand while my friend is wondering why I suddenly stop talking. My oncologist cannot explain why this happens after 4 years post treatment and not earlier. The only explanation is that different side effects of the radiation emerge gradually and at different times. Like you, I sometimes wonder whether there are more adverse effects coming that may affect my hearing, my vision, my memory... but I know all this is out of my control. What I know is that I am already very lucky that I can survive this battle. In August, I lost a friend of another school who was defeated 2 months after being diagnosed with nasopharyngeal cancer.He still presented himself at a professional seminar in early June not knowing that cancer was already working in his body.I couldn't believe my ears when learning his death in mid August.

Karen

There is a lot of information on lingering or late-developing side-effects from prostate cancer radiation, as it's such a common cancer and gets a lot of attention. Typically, there is nerve and blood vessel damage which is not present when the treatment itself ends but gradually develops over 2-3 years, sometimes with unwelcome effects such as erectile disfunction or bladder control issues. But increased use of IMRT has started to reduce these side-effects. One rather scary paper came out last year, in which the rate of bladder cancers in men receiving brachytherapy (in form of permanent seeds) was 2x that of men who were not treated BUT the actual rate (%) of patients affected was very small -- like a change from 1% to 2% -- so not a reason to refuse treatment.

As Brian says, everyone is different both biologically and in how their body responds to both the treatment and the cancer itself. Optimism has been shown (in actual double-blind studies) to improve HNC patient's outcome after treatment significantly.

Gail

I am wondering about what effects radiation might have if you have it on two different bodily sites but within a relatively short time.

I have already had HNC radiation and I have some nerve side effects in my face--my smail is still not what it was and I think its because of some nerve damnage to nerves in my upperlip. When I press my skin aournd my lips or where my cheeks are still puffy I also get a pins and nedles feeling, as though there are dmaged nerves there--which I assume may get worse over time. And I had IMRT by the way.

But in less than a month I head back to rad. medicine for 6.5 weeks of radiaiton to my right breast where I had breast cancer. Back when I was diagnised with breast cancer (three weeks after being diagnosed with oral cancer) my breast cancer was small enough that I had a choice between lumpectomy/sentinal node removal followed by rad, or a mastectomy, no rad needed after. Obviously, the lumpectomy is a far less disfiguring surgery although these days, very good recontrstructive techniques exist for people with mastectomies--the main isse being you end up with a breast that has no nerve endings and that is, um, a loss.

So I chose teh lumpectomyh, but not without wondering if it was really OK to have radaition twice (to two different areas of the body) that close together. Originally, when I made the choice to have a lumpectomy/sentinal node removal with radiation, as opposed to mastectomy without radaition, for my breast cancer, I had been told that would be no problem by the then-rad oncologist here (who just after this, and before I was treated for oral cancer, left, rumor says he was asked to leave by Roswell Park who is managing the rad. medicine facility here).In fact, he said I could have the radiation for both together, something NO other opinion--either from his replacement or from the folks at Dana Farber-- has agreed would have been a good idea.

But by then I'd already had the lumpectomy--I wasn't going to go back and choose a mastectomy at that point (though actually the folks at Dana Farber suggested that might be the better option)and my rad oncologist here (who is from Roswell Park) said there wouldn't be any problme having one and then having the othera few months later. I asked him again recently about long term effects with so much rad exposure, though to 2 different areas. he said it's likely I'll have more than the average experience of fatigue from the breast cancer radiation and that "there was no good research on long term effects".

But couldn't there be some? I know rad. damages cells in the specific area but aren't there any system-wide effects that would be magnified? Does anyone kow where I could find more info. about this?

Nelie

Nelie,

Regarding your comment about the nerve damage and "pins and needles" sensations in your face -- you may well find that these diminish or disappear entirely over time. I had the same sensations for quite awhile after my treatment ended, especially anywhere near my incision. The nerve regeneration process seemed very slow, but it did happen (and as far as I can tell, all of the "normal" sensations in that area returned completely).

Cathy